WEST HARTFORD, Conn.—The National MS Society’s annual MS Vacation Week, as its name implies, offers opportunities for participants to swim, fish and relax. For West Hartford resident Antonietta Roy, however, what matters most is meeting others who know what she struggles with every day.
“I have been living with the effects of multiple sclerosis for 13 years,” recalled Roy when asked about her life’s journey that led her to MS Vacation Week. “It took four years and four different neurologists to finally find out why I had stabbing pains in the back of my head, why my feet were numb and why I would often lose my balance. One doctor told me the lesions were nothing to worry about, one told me I was just stressed, and a third said I needed to start medications right away. But, that’s what multiple sclerosis can be like – it’s a lot of not knowing what could happen next.”
Roy continued to say that her life with multiple sclerosis has been challenging, but she is thankful for the few good friends, or angels as she calls them, who have helped her along the way.
“There was one medical intern who showed me true compassion at the time of my diagnosis, who encouraged me to start taking medication to help manage my symptoms,” she shared. “I remember her saying, ‘If you were my mom, I’d want you to be smart and start taking medication.’ That was the push I needed to see an MS specialist in Hartford.”
Symptoms of MS can include, among other things, numbness and tingling in the extremities, difficulties with vision and speech, extraordinary fatigue, stiffness in the limbs, and in extreme cases, complete paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted.
In the last decade, Roy has continued to struggle with symptoms of her MS, including loss of balance, troubles with speech, and foot drop. She says that these symptoms are primarily on her left side, and has resulted in the need to see physical therapists, occupational therapists and speech therapists six days a week in addition to a monthly appointment with her neurologist.
“Without the support of a doctor, living with MS can be very difficult to navigate,” she said. “Fortunately, my 14-year-old son, Brandon, is a very loving and caring young boy. He is always asking how he can help, if I’m okay, and takes precautions like walking behind me as I climb the stairs to ensure that I don’t fall. When I was taking injections for my MS and was very weak, he would even carry me to bed.”
Through it all, Roy has remained positive, aims to stay independent, and does her part to help find a cure for the disease.
“I really don’t like to rely on others, and I often get angry with myself when I can’t do something,” said Roy, who is still working as a teacher’s aide. “But I know I have to keep going, and my colleagues have been very supportive, too. Our school even hosts fundraisers like dress-down days to raise money for the National MS Society.”
Over the years Roy has found that the thing she is looking for most is support from others who are living with the potentially debilitating effects of multiple sclerosis.
“I remember getting something in the mail about MS Vacation Week, and the one thing that drew me to the idea wasn’t the fact that I haven’t been on vacation in 15 years, it was the opportunity to be with people who can relate to me and understand what I’m going through,” said Roy. “That in itself would be a welcome vacation from reality.”
Generating awareness for multiple sclerosis is one of the National MS Society’s primary goals. With more than 6,500 Connecticut residents, like Roy, living with multiple sclerosis, the local chapter is continually raising funds to help further MS research, working to generate a greater awareness of the disease, and offering support programs to those who need it today.
Roy is one of 41 vacationers with MS who are looking forward to MS Vacation Week. This year, she was named the recipient of the Susan A. Hyams Memorial Scholarship which is funding her trip. As a tribute to his wife, who succumbed to complications related to multiple sclerosis in 2002, the scholarship was established in 2003 by West Hartford resident and Connecticut Children's Medical Center physician Jeffrey Hyams, M.D.
“MS Vacation Week is a rare opportunity for those living in advanced stages of MS to experience fun-filled camp activities not usually accessible or achievable because of the disabling effects of the disease,” said Lisa Gerrol, chapter president. “We are thankful to Dr. Hyams for his generous support, which annually funds MS Vacation Week fees, personal care assistance and transportation for clients to attend this vital program.”
The scholarship will enable Roy to attend the weeklong respite in June at Easter Seals Camp Hemlocks, An Oak Hill Center in Hebron. Camp Hemlocks is specially designed for full accessibility, and the facility provides a unique environment allowing for optimal opportunity and independence, no matter what a person’s level of ability may be.
“I was very excited to receive word that I had been chosen as the recipient of this year’s Hyams Memorial Scholarship,” shared Roy, who at 53 will be attending the camp for the first time this June.
MS Vacation Week activities include arts and crafts, boating, fishing, nature walks, archery, scavenger hunts, yoga, field games, campfire karaoke, a talent show and even a drive-in movie night. Educational presentations on symptom management, research and animal therapy will also be offered to attendees. Vacation Week will be held from Sunday, June 14, to Friday, June 19.
“Antonietta is a perfect example of why we host MS Vacation Week,” said Amy Watkins, programs manager for the chapter. “When we heard her story, we knew that our week-long program would be perfect for her.”
If you would like to know more about MS Vacation Week or the Susan A. Hyams Memorial Fund, please contact Amy Watkins, programs manager at 860.913.2550, or amy.watkins@nmss.org.